Friday, May 11, 2012

Diabetes TrialNet

TrialNet sent us lidocaine dressings to reduce pain. It might have worked?

I joined a Clinical Trial and it includes having my three kids tested for auto-antibodies. The TrialNet people shipped me a test kit, and told me which lab to go to. Since the lab is only open on weekdays, I waited for a day when I needed to stay home anyway, and took them.

They were very nervous to get their blood taken. They don't remember ever having it done. All week long they were asking questions about the process and shuddering when they considered it. I was calm and upbeat and reminded them that I do it all the time. "Well, Poppy, you are brave."

When we arrived at the lab the person behind the counter wasn't happy to see us, AT ALL. She said many things, trying to scare us away.

"Three kids?" (heavy sigh)
"I've never heard of this kind of thing before." 
"You should have made an appointment." (raised eyebrow)
"We don't do these tests here."
"I'll have to call my supervisor. "
"Did the kids eat today?" (raised eyebrow)
etc., etc., (disapproval all around)

It was pure attitude and lots of tension. I'm trying to convince my kids that this is going to be a smooth and easy process and the woman was making it very clear that we are not welcome, and everything was wrong. But, I have to say, we followed all the directions we were given... so we stuck with our plan, and she had to get on board.

After she called the clinical trial people and got everything clarified she invited us into the room to have blood drawn.

Ellie stepped up, rather reluctantly. She took a seat and got through it, felt a bit faint afterwards. She did great.

Simon was next. She had a hard time finding his vein and had to poke around on his left arm (poor guy). He was trying to be brave. A few tears came. She had to do the other arm. He started to cry. I stood up close with a hand on him, and tried to comfort him. By the time it was over, I realized that I felt queasy/sweaty myself from the situation, and thought it would be really silly if I were to crumple on the floor. I sat down for a few minutes between kids to make sure I was feeling normal. I swear that getting the three of them through this was much harder than anything I've had to endure over the years myself.

Penny was really nervous after seeing how things went for Simon, but she did fine and we were DONE.

Phew! I looked my CGMS display and since I had walked into the office my BG had shot up 70 points. I think that would be stress/adrenaline...

The kids noticed the irony, but, their reward for being so brave and compliant was that I took them out for ice cream. Diabetes auto-antibodies test = ice cream = yay! I had a nice coffee with heavy cream and enjoyed just sitting in the sun with the kids and talking. They are fun people.

What now? Well, the lab Fedexed the test vials to the clinical trial people and they will get us the results in something like 4 weeks. If anyone tests positive for auto-antibodies we might have access to preventative measures to reduce the likelihood of beta cell decline. Personally, I would also consider an auto-immune protocol from the Paleo/ Primal camp to make sure the immune system is nice and relaxed about everything. 

1 comment:

  1. I had meant to comment on this one long ago! Not surprised at all that you had a BG rise like that from this scenario. It will be really interesting to hear how the results come out. And I think it's pretty awesome that you already know about the ideal auto-immunity approach, in case any of them are at risk. I think about this a lot for Amelia-- she was hypoglycemic when she was born, and also had pretty low BG a couple times when I tested her as a toddler, so I think she's at higher risk. I am glad she mostly eats a paleo diet, but I do wonder how much those little treats/ bits of gluten every now and then impact her overall. Hopefully, we're doing well enough. But it would be completely worth being strict if it could keep her from developing the disease. 100% worth the trouble!